How I Respond to Typical Questions About MS From Children, Adults
Age makes a difference when discussing the condition, writes this columnist
As I’ve probably mentioned before, my wife and I have three boys in grade school. This means that between school events, sports, and play dates, I’m around a lot of kids. Considering I use a wheelchair, my multiple sclerosis (MS) isn’t exactly invisible, so I’m often asked a lot of questions. My favorite one so far is, “How do you pee?”
I think I prefer questions from children rather than adults. There seems to be a genuine curiosity behind the children’s stares, instead of the awkward — or worse, morbid — fascination of adults. Most adults seem embarrassed to be curious and avoid asking questions in favor of making assumptions. Unfortunately, these assumptions are almost never accurate. A typical conversation with an adult might go as follows:
“Were you in a wreck?”
“No, I have multiple sclerosis.”
“Oh. So your back’s not straight?”
“You’re thinking about scoliosis.”
“You don’t get enough vitamin C?”
“What? No, that’s scurvy!”
Children, on the other hand, almost never assume. They accept that they don’t know everything and aren’t afraid to add to their knowledge by asking. Some adults aren’t, either, but many don’t want to appear unknowledgeable. The remainder are walking, talking examples of the Dunning-Kruger effect: supremely confident in what they (wrongly) think they know.
The reverse Dunning-Kruger effect
I’ll confess that until I had MS, I knew almost nothing about it. I knew of its existence because I had a teacher in high school with the relapsing form, and it was mentioned in a class later in college. In the eight years following my diagnosis, during which you could say that it’s had my undivided attention, I’ve learned a lot — mostly about how much I still don’t know. It’s sort of a reverse Dunning-Kruger effect — I know that I don’t know very much and am flattered when someone, either an adult or a child, asks a genuine question that I can answer.
I see two neurologists, both MS specialists with years of study, research, and experience behind them. It’s unnerving and comforting when either of them tells me they don’t know everything. It’s unnerving because I’d hoped they would, but also comforting because of their humble honesty and my own confidence that they know far more than I do.
Yes, I know I’m very fortunate to have doctors like this. No, I don’t plan on telling them because I don’t want to spoil the humble part.
Besides their technical and professional expertise, nothing compares with talking about MS with other people who have it. That’s where I learn that each experience is unique, the internet isn’t always right, and what works for one doesn’t always work for another. Among my peers, my childlike curiosity is welcomed, and I’m grateful for it.
Oh, right, how did I answer that question I mentioned in the first paragraph of this column? I said, “The same way you do, kid. There’s just extra steps, so you can’t wait till the last minute.”
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Lorna Humphreys
An interesting article. Which of us hasn't met misunderstanding disguised as "knowledge"? I have secondary progressive MS and the misunderstanding I meet most is that I have muscular sclerosis and I have weak muscles! The answer I have found to be most useful is to say that it is actually a problem with my central nervous system and saying I have MS gives about as much information as saying I have broken a bone! So not a lot! Each person's MS is peculiar to them as it depends where the "damage" is, though some symptoms such as fatigue and mobility problems are more common. And, yes, children are more direct, so when they ask I probably give a little more information than they need to educate the adult with them! Thanks for your musing and writing.
Benjamin Hofmeister
Educate the adult with them.....that's wise advice Lorna! I think I'll put effort into that. Thanks!
Ben
philip rickey
I usually fall back quickly to the 'defects in insulation in the brain and spine' model.
It is simple enough to understand by many people withing being excessively detailed.
Benjamin Hofmeister
I tell people there's a conduction problem with my wiring. Then I get, "are you sure it's not just ___", or, "What you need to do is ___".
When that happens I bore them with details until they want to escape.
Ben
Marian Gent
Loved it! Laughed at the end, so true.
Benjamin Hofmeister
Thanks Marian!
Gary Hendricks
Benjamin,
I enjoy your writing.
Keep it up.
Benjamin Hofmeister
Thanks for reading them Gary. I'll keep it up if you do.
Ben
Diane Flaye
I was just shy of being 60yrs . when diagnosed with MS. Having lived more or less in same area, and being a hairdresser...I was well known. I collapsed with what was....really extreme fatigue....couldn’t walk, barely stand, felt my cognitive head had got lost. headaches, completely lacking in energy, my feet went numb, and lower limbs felt like solid lumps of frozen flesh......my arms are very similar to that now, very heavy , can’t hold a newspaper for very long...or this iPad ...they hurt a lot.......but....I’m really lucky, because mine is RRMS. I say lucky cos I can walk, not very far, my legs won’t run . This in a way presented the fact that people would say , are you sure you have MS, is it not your age, or your just tired., you look ok.? This happened, nearly over night., I never went to a Dr. straight away, I’d found out my husband was a cheat.....I think it was such sudden shock !! I was then 55 yrs. Because you look fine makes it more difficult in a way....I sleep an awful lot, which for me is a problem, I’ve been self employed hairdresser all my life, and of course am now living alone....I can’t do a days work any more, but I’ve loved my job, used to say it was my hobbie....it still is. MS like all these immune problems is very cruel, trying to sort out energy.and time is so difficult, I panic a lot and get so worked up, then I can’t think properly, Christmas is really difficult....I just can’t do things at all, frustating. One of the hardest things now is I can’t bear the heat. In our hot weather I’m completely exhausted ....really can’t bear it its overwhelmingly un comfortable. I hope this helps a few people understand a little more about MS.
Benjamin Hofmeister
Thanks Diane. It is such a cruel disease and takes so much from us doesn't it? If I can increase awareness even by one person, I'll feel like I accomplished something.
Ben
lesley j
as always a great article which made me laugh , as a father of 3 boys how ,or did you , explain to them what was wrong with you ?
Have two grand children who can not understand why grandma can not go to the beach anymore just dont know how to start
Keep writing Ben
Benjamin Hofmeister
Hello Lesley! If I ever tried to explain everything wrong with me, it'd take weeks lol. As for MS they've never really known me without it and I've tried to answer every question. They seem to grasp the concept of bad wiring from their electric toys, so that's the example I use. What they have trouble with is the inconsistancy. "But you could do ____ last week."
I still have trouble with that too.